[stevem53]

Hi Everyone, and a warm welcome to our new community members..We hope you find the same fellowship that we have all found on this little cyber space oasis

I attended our spring symposium today, and the top R.I. Neurology Team talked about clinical trials, DBS surgery, and compulsive behaviors caused by dopamine agonists..It was short this year..Last year we had Monica Billger speak about advocacy

Ive been busy fishing for the most part, and doing twice as well this year mostly due to the new boat, and being able to explore new fishing grounds that I couldnt get to with the old boat..It has been quite an adventure fishing new areas and building different variations of traps in hopes to find the right combination..I did however push myself too much, and took a nap at 5:30 yesterday evening and woke up at 12:30 am..I have never taken a nap that long since my dx..I stayed up for about 90 minutes and went back to bed and slept through the rest of the night..I am also pleased that I can do as much work as I was capable of doing last season

How was your week?

[oyster]

to hear aout your fishing, steve, its is inspiring me togo!!


the past week i have been taking care of my daughter while my poor wife has suffered with a serious sinus infection. she is thankfully now on medication and gettiing better.

it is a wonderfl thing to spend whole days and nights with my daughter. why then do i feel that i should be working? and maybe even a little guilty? then when i'm working i feel the same way that i'm missing ot on being with my daughter and a bit guilty abot that?

is this

being neurotic??


97 degrees yesterday- phew!


got a bad knot in my left shoulder, worse stiffness and shaking in my left hand.
founders day picnic today for my fellowsship group, celebrating 72 years

[burckle]

Hi:

Hi:

We are moving to Maine in about 5 weeks. Yeserday we had an antique dealer come over and look at our furniture and things. What we thought were valuable, weren't and what we thought were junk weren't. THe dealer was very knowledgable and took some things on consignment. He bought my 1642 pamphlet, Caleb's Integrity. While he was there a fellow dropped by and asked if they could use our backyard and kitchen for a TV commercial shoot. He took pictures (said our kitchen was a "perfect 1960's kitchen." He'll get back to us.

Everything else is fine;house has been sold, babies are growing, work is winding down, getting rid of my libraries, looking forward to the new life in Maine.

All the best,

Lloyd

[mamafigure]

Steve, your positive attitude always inspires me. Thank-you for always having this check-in spot. Oh, happy fishing!! My husband, brother and father are going to Alaska to fish in August. It is a male bonding thing for them.

Oyster, sure hope that your wife is doing better. My husband suffers from terrible sinus problems, also. Enjoy the time you spend with your daughter, but don't muddy it with guilt.

Lloyd, all of my memories of Maine are wonderful. Enjoy your new life.

The neuro called me and apologized for the drug's effects (from an earlier post) and after a week, it has finally worked its way out of my system. My balance and walking abiliity have backslid after this surgery to where they were before Mirapex even though I am still taking it. It is becoming very frustrating. I can't tell if the pain and the problems are from the surgery, the conditions that weren't fixed evidently from surgery, or the parkinsonism sx.

My neuro told me that what I have shouldn't get worse, but it is, so do you think that I have PD? At this time, after 7 years I have right sided tremors, insomnia, vision problems, can only walk a short distance, drag right foot, drop head to right when even the slightest bit tired, and at this last visit - fell both times during balance test (dr caught me, of course). I don't have cogwheeling or stiffness.

Have a great week everyone,

[Stitcher]

I don't have much cog-wheeling after all these years...a slight bit on the right side. Over the years it has frustrated my neuro's. They keep wanting to find it and it isn't there.

My daughter's home is being packed up to move in 10 days. What a mess moving can be! We had a moving sale in the yard on Saturday. By the end of the day, even meds didn't turn me on...ha ha ha.

My six year old grandson called me on the phone this morning to ask me if I would take him and his siblings out to spend the money they have saved up. What can one extremely tired grandmother say, even though this was suppose to be the only day home since last weekend, and may be the only day home until next weekend..."Yes, I will be over in a couple of hours!"...with much excitement in my voice.

So, off we went to Target, where he knew he could find that one Lego set he has been eyeing for a couple of weeks now.

Another busy CERE-120 week behind me in Philadelphia. One more day this week for more tests. Then the big week is next week... Being 100% off is not a nice thing to ask an 18-year PD Vet to do but I have done it twice in the past three weeks, will do it again on the 18th, and again the end of July I will say that the visual effect was quite sobering for my two daughters!

Have a Wonderful
summer-wordart.gif
Week

[Ronhutton]

I already have a dislocated left shoulder, and went to a specialist in London, who said they can't do anything. A severed muscle will never recover, he told me.
Guess what I did today, had one of my falls, and unfortunately, my wife and I were standing in front of the greenhouse, discussing getting rid of it. Suddenly, I fell, forwards, and glass smashed in every direction.My wife got me to my feet, and i saw blood streaming down my trousers. A large piece of glass was sticking out my (bad) shoulder.. To cut a long story short, she managed to pull the glass out, it was stuck hard, and drove me to hospital. They put 6 stitches in part of it, but it needed too many, so they glued the rest!!
So I'm grounded for a week or two.
Take care all of you!!!
Ron

[RLSmi]

Ron, so sorry to hear about your fall and injury. Being grounded and injured so seriously is a major bummer! Take care and try to rest.

Nothing major to report from here. Mid-day temps already in the 90s (F) with relative humidity sending the "heat index" well into the 100s.

[K Hamilton]

It's been quite a while since I last checked in here, so I'm glad to see that all of the old faces are still here (one of these days I'll get my face on here, but that can wait a while longer). I don't really know why I haven't been visiting, just got busy, I suppose. Life has been pretty good, all told, so I guess I'll give the complete rundown to anyone who is interested.

I turned 60 this last weekend, on the same day our son graduated from Seattle Pacific University (major in Theology, minor in History). Our daughter is now living in Ann Arbor, where her husband is a math prof at some level (which comes first - associate prof or assistant prof?), and is expecting her first in December. Our first grandchild !! Ask me - am I pleased??!! She is working remotely part time for the same engineering firm she worked for in Seattle, and thinks that she'll be able to continue after the baby comes, since it is so easy from home. Anyone want to take odds?

Last Christmas she bought me tickets for a walking tour of some Frank Lloyd Wright-designed houses in Oak Park (outside of Chicago), plus his home and studio there. It took place end of April, and we had a great time, just the two of us. (I have only recently discovered Wright; it is much easier to understand his later works if you go back to the earlier work and follow it through, which I finally did a few years back. Infuriating person, but ya' gotta love his work. Now, I have a collection of twelve different neck-ties based on his designs!)

I have recently (three months) put on something along the lines of 25 pounds, and I am not enjoying it in the least. I have never experienced true compulsion before, but this was definitely compulsive eating - it was like my hands and mouth were operating completely independently of me. I would be stuffed and uncomfortable, and still chowing down on whatever came to hand. Sound familiar to anyone? My first thought was that it was the Mirapex, but I hadn't changed dosage on it for a year, whereas I had recently gone up on Seroquel so I could get some sleep. (Yet another side-bar: went three weeks averaging 2.5 hours per night, including one night without sleeping at all. Somehow still managed to keep functioning rationally during the day). When I stopped the Seroquel, things seemed to improve for a while, but I am completely off of the Seroquel, and over-eating again, so maybe it is the Mirapex.

PD is continuing merrily along. I can honestly say that I am still in the "adventure" stage - wondering what is going to be next thing to show up. I have started to experience very rapid on's and off's, but the main symptom that shows up is just tremor, so that isn't too bad yet. It is a little bit embarrassing to be fumbling at the checkout counter, but I have had some very nice cashiers help me get things back in to my wallet. And of course, the more nervous one gets because of trying to hurry, the more one fumbles. Nonetheless, I am starting to be a bit more optimistic about making it until age 65 without too much difficulty. Who knows how things will really go, but might as well look up (notwithstanding the "Parkinson's slouch" tending to point my view down).

So, like I say, things look pretty good right now. Trouble is, with a long history of pretty major cyclical depression, I get nervous any time I feel good that things will go downhill again. In fact, even the people at the office are getting nervous about it; one of them came to me last month to say he was worried about my being happy (how is that for irony?) I assured him that my wife, my psychiatrist and I were all watching my mood like hawks.

Anyway, that is enough about me for now, so it is back to reading what the rest of you have to say!

[K Hamilton]

It's been quite a while since I last checked in here, so I'm glad to see that all of the old faces are still here (one of these days I'll get my face on here, but that can wait a while longer). I don't really know why I haven't been visiting, just got busy, I suppose. Life has been pretty good, all told, so I guess I'll give the complete rundown to anyone who is interested.

I turned 60 this last weekend, on the same day our son graduated from Seattle Pacific University (major in Theology, minor in History). Our daughter is now living in Ann Arbor, where her husband is a math prof at some level (which comes first - associate prof or assistant prof?), and is expecting her first in December. Our first grandchild !! Ask me - am I pleased??!! She is working part time remotely for the engineering firm she worked for in Seattle, and thinks that she'll be able to continue after the baby comes, since it is so easy from home. Anyone want to take odds?

Last Christmas she bought me tickets for a walking tour of some Frank Lloyd Wright-designed houses in Oak Park (outside of Chicago), plus his home and studio there. It took place end of April, and we had a great time, just the two of us. (I have only recently discovered Wright; it is much easier to understand his later works if you go back to the earlier work and follow it through, which I finally did a few years back. Infuriating person, but ya' gotta love his work. Now, I have a collection of twelve different neck-ties based on his designs!)

I have recently (three months) put on something along the lines of 25 pounds, and I am not enjoying it in the least. I have never experienced true compulsion before, but this was definitely compulsive eating - it was like my hands and mouth were operating completely independently of me. I would be stuffed and uncomfortable, and still chowing down on whatever came to hand. Sound familiar to anyone? My first thought was that it was the Mirapex, but I hadn't changed dosage on it for a year, whereas I had recently gone up on Seroquel so I could get some sleep. (Yet another side-bar: went three weeks averaging 2.5 hours per night, including one night without sleeping at all. Somehow still managed to keep functioning rationally during the day). When I stopped the Seroquel, things seemed to improve for a while, but I am completely off of the Seroquel, and over-eating again, so maybe it is the Mirapex.

PD is continuing merrily along. I can honestly say that I am still in the "adventure" stage - wondering what is going to be next thing to show up. I have started to experience very rapid on's and off's, but the main symptom that shows up is just tremor, so that isn't too bad yet. It is a little bit embarrassing to be fumbling at the checkout counter, but I have had some very nice cashiers help me get things back in to my wallet. And of course, the more nervous one gets because of trying to hurry, the more one fumbles. Nonetheless, I am starting to be a bit more optimistic about making it until age 65 without too much difficulty. Who knows how things will really go, but might as well look up (notwithstanding the "Parkinson's slouch" tending to point my view down).

So, like I say, things look pretty good right now. Trouble is, with a long history of pretty major cyclical depression, I get nervous any time I feel good that things will go downhill again. In fact, even the people at the office are getting nervous about it; one of them came to me last month to say he was worried about my being happy (how is that for irony?) I assured him that my wife, my psychiatrist and I were all watching my mood like hawks.

Anyway, that is enough about me for now, so it is back to reading what the rest of you have to say!